During the MLST I didn't sleep at all. My first nap was an hour and fifteen minutes after I woke up. Then the second one was an hour after that one ended. Then after the second nap the sleep tech told me I only needed to stay for two more naps. Which really stressed me out! I mean if they ruled out narcolepsy already, what could it be?

That sounds odd to me. I thought the naps were supposed to be 2 hours apart, starting 2 hours after you woke up from the PSG. At least, that's what everything I've read told me, and how mine went.

I also didn't think I'd slept for most of the naps--I never felt like I was falling asleep, like I was sleeping, or like I was waking up, just like the sleep attacks that took me to the doctor in the first place--so when the tech came in and woke me up and asked if I'd slept, my answer for 3 of them was, "Has it been 20 minutes? Well ... I didn't think I slept, but I guess I must have, 'cause it only feels like a couple minutes, and if I'd lain here awake for 20 minutes, I'd be bored to tears and it'd feel like hours." (The other two were, "I guess I must have, 'cause I remember dreaming.") And, as it turned out, I slept for all 5 naps.

The SSRIs and sedatives I have tried have made my sleep moderately to significantly worse. I liked what Prozac did for me for alertness (though I still fell asleep/napped a lot), but my dreams were horrid. It was non stop nightmares. The content of the dreams were so violent (violence occurring around me) and crazy. Trazodone made my SP and HH a lot worse. Wellbutrin and Lexapro had moderate sleep interruptions, but nothing like Prozac.

I don't think my doctor buys any of my tingling/numbness/knees shifting/collapse as cataplexy.

BC:

The sleep technicians can't really rule out anything for you, but they do score the PSG and MSLT. Hopefully you will have a good doctor.

The SSRIs and sedatives I have tried have made my sleep moderately to significantly worse. I liked what Prozac did for me for alertness (though I still fell asleep/napped a lot), but my dreams were horrid. It was non stop nightmares. The content of the dreams were so violent (violence occurring around me) and crazy. Trazodone made my SP and HH a lot worse. Wellbutrin and Lexapro had moderate sleep interruptions, but nothing like Prozac.

I don't think my doctor buys any of my tingling/numbness/knees shifting/collapse as cataplexy.

SSRIs and SSNRIs can be like that for many people. I know that Wellbutrin made my dreams crazy when I took it to quit smoking many moons ago. Has your doc talked about a TCA, Tricylics don't seem to have the same occurrence of dream disturbance that the newer antidepressants have. In fact, Protriptyline seems to have the opposite effect for me. Which is why my doc prescribed it in the first place.

I can't afford another sleep study. I can't afford a second opinion. I don't know what to do about all of this. I plan on trying the clonazepam to try to suppress the dreaming, but my PCP and I talked about benzos and anxiety a long time ago and we both agreed benzos are not a good long term solution. I guess I'm glad the pulmonologist didn't completely swear me off to psychiatry, but I can't afford to keep going back to him for follow ups. There is no one cheaper that I can see either. I am considering calling a university here that has a highly regarding sleep clinic to see if they would be willing to work with me and my no insurance problems.

I remember in an earlier post, you talked about getting a referral to a neurologist, and that your PCP would give you a referral, if the pulmonologist didn't. Is that still an option for you?

I'm sorry it has been so long since I posted last. Life has been so stressful and overwhelming.

I had a follow up with the pulmonologist. The clonazepam dose has been increase and he also wants me to try amitriptyline. He finally talked about cataplexy with me, partially acknowledging my concerns this time. I told him the clonazepam has actually helped with the SP/HH and partially with the vivid dreaming, but not completely. It doesn't help if I nap since I don't take it when I'm supposed to be awake.

We talked about why narcolepsy is so hard to get diagnosed and he said that physicians fear drug seekers (looking for things like Ritalin - which I already take) and it is a diagnosis that will stay with you the rest of your life.

He said he has repeated sleep studies 3 or 4 times before some of his patients get diagnosed and I literally dropped my jaw open. He said he wants me to repeated the sleep study, but won't do it until I'm off of third shift. Even though the PSG could be run during the day and the MSLT could be run during the night, he doesn't think the results would be good. I can't afford another sleep study right now so I'm not really sure what to do.

He hasn't talked about a neurology consult yet. I'm going to ask my PCP for a referral, but I can't afford that either. The state has us in a really weird place with insurance and I haven't been able to get out of it. This has been a big part of the current life stress.

I'm sorry this post is in such a weird format. I'm not sure what happened there.

I will come back to report about the amitriptyline, but I am really not excited about trying another anti-depressant, even though it is a TCA, and I don't want to gain weight either. My doctor said he takes it for nerve pain and the side effects sound kind of like Trazodone, even though Trazodone is not the same drug class.

I'm sorry it has been so long since I posted last. Life has been so stressful and overwhelming.

I had a follow up with the pulmonologist. The clonazepam dose has been increase and he also wants me to try amitriptyline. He finally talked about cataplexy with me, partially acknowledging my concerns this time. I told him the clonazepam has actually helped with the SP/HH and partially with the vivid dreaming, but not completely. It doesn't help if I nap since I don't take it when I'm supposed to be awake.

We talked about why narcolepsy is so hard to get diagnosed and he said that physicians fear drug seekers (looking for things like Ritalin - which I already take) and it is a diagnosis that will stay with you the rest of your life.[/size]

He said he has repeated sleep studies 3 or 4 times before some of his patients get diagnosed and I literally dropped my jaw open. He said he wants me to repeated the sleep study, but won't do it until I'm off of third shift. Even though the PSG could be run during the day and the MSLT could be run during the night, he doesn't think the results would be good. I can't afford another sleep study right now so I'm not really sure what to do.[/size]

He hasn't talked about a neurology consult yet. I'm going to ask my PCP for a referral, but I can't afford that either. The state has us in a really weird place with insurance and I haven't been able to get out of it. This has been a big part of the current life stress.

I'm sorry this post is in such a weird format. I'm not sure what happened there.
I will come back to report about the amitriptyline, but I am really not excited about trying another anti-depressant, even though it is a TCA, and I don't want to gain weight either. My doctor said he takes it for nerve pain and the side effects sound kind of like Trazodone, even though Trazodone is not the same drug class.

Please be very careful with Clonazepam. It is a benzodiazapine and requires a long slow taper of 6 months to get off. It supresses stage 3 and REM sleep.

I was prescribed this medication. It invalidated my first MSLT and prevented sleep onset REM. 6 months later I repeated the MSLT and hit SOREM twice and was diagnosed.

please view www.recovery-road.org for information on benzo withdrawal. This is not a medication for long term use and there are safer alternatives. It is a long acting sedative which made my EDS even worse. Please be very careful- I speak from experience.

He said he has repeated sleep studies 3 or 4 times before some of his patients get diagnosed and I literally dropped my jaw open. He said he wants me to repeated the sleep study, but won't do it until I'm off of third shift. Even though the PSG could be run during the day and the MSLT could be run during the night, he doesn't think the results would be good. I can't afford another sleep study right now so I'm not really sure what to do.

Odd, that. My PSG and MSLT were done on 3rd shift (PSG in the afternoon/evening, MSLT at night) and the results came back just fine.

Then again, I've had a circadian rhythm disorder all my life. That's why I've worked third shift for most of my adult life--it's the only time I've ever felt remotely "awake". Switching to a "normal" shift would just make things so very much worse for me.

He hasn't talked about a neurology consult yet. I'm going to ask my PCP for a referral, but I can't afford that either. The state has us in a really weird place with insurance and I haven't been able to get out of it. This has been a big part of the current life stress.

I will come back to report about the amitriptyline, but I am really not excited about trying another anti-depressant, even though it is a TCA, and I don't want to gain weight either. My doctor said he takes it for nerve pain and the side effects sound kind of like Trazodone, even though Trazodone is not the same drug class.

I'm sorry that not having insurance, makes it so much harder for you to access the healthcare you need. Especially since complex sleep disorders can be difficult to get a diagnosis for at the best of times. I think it really depends on the particular sleep specialist, whether they feel comfortable diagnosing narcolepsy, without the conclusive MSLT result. I'm pretty sure that if I saw your pulmonologist, he wouldn't have diagnosed me with narcolepsy yet, based on the 3 sleep studies/2 MSLTs that I have had. I hope that things will start to come together for you soon, and be less stressful and overwhelming.

I actually take amitriptyline as well. It does tend to have quite a different side effect profile to some of the other antidepressants that you mentioned you have taken before. And amitriptyline reduces REM sleep, whereas I don't think trazodone does.

Amitriptyline was prescribed for me to prevent migraines, and it helps a lot with those. But I also found that I get less dreams, less HH, less SP, and less cataplexy-like symptoms, as well. It took me a while for my body to get used to taking it, and i had to start at a really low dose and increase it slowly, but now it doesn't seem to cause me any problems. It hasn't caused me to gain weight either. I think it tends to be the really big doses used in depression that leads to weight gain, rather than the relatively smaller doses that are often used for it's other indications.

I just got diagnosed with MS this weekend by an emergency department physician and a neurologist.

I'm devastated. I don't know where to start. I mean, I have been doing a lot of reading online, and talking with neurology, but this feels overwhelming. I don't want this. I guess no one does.

I'm going to do my best to stay in remission, but first, I need to get to remission. I'm getting blasted with steroids to try to get my vision back in my right eye. I have small lesions on the front of the brain and the top of the spine (cervical spine).

Damn. I just don't know where to start as far as really reliable information, I don't have insurance, the medication will be pricey, I will probably need physical therapy and occupational therapy, maybe look at homeopathic stuff? Whoa. I know i have a lot of catching up to do on this board! That's one place to start.

Honestly, though, this feels like a major game changer. Does anyone have suggestions?

lkl and Hank:

I stopped using both the benzo and the tricyclic. I didn't feel like they were helping as much as intended and I didn't want to go down the addiction route with the benzo and the dose increase with the tricyclic. I kind of wonder if all of these crazy sleep problems would be connected to the MS.

Whoa, Dormir, that is big thing for you to deal with. I'm glad that you finally got some answers though, and some validation for your symptoms that were unexplained before. I hope you are able to get into remission soon, and get some relief from your symptoms.

Whether your sleep problems are directly due to the MS, or if you are susceptible to auto-immune conditions, and developed more than one, would be hard to say. Did the neurologist give you any of their thoughts on that?

I would be careful about looking into homeopathic products. These are generally made by diluting a particular substance (which in most cases, undiluted would cause the symptom that is trying to be treated), to the point where there is literally no trace of the original substance left. True homeopathic products are essentially water, with a "memory" (if there is such a thing) of the active ingredient. There may be other natural alternatives though, that don't necessarily use homeopathy.

That is good insight about homeopathic stuff. I think I'm going to explore different supplements that generally benefit inflammation and work as antioxidants. I'm still doing a lot of research because I don't want to overwork my eye that has optic neuritis right now (that led to the MS MRI), but I'm reading as much as I can! My diet is already pretty close to being MS friendly, though I have seen a lot of "get rid of eggs" advice. Eggs are one of my main protein sources so that would suck to get rid of them.

I didn't see that thread you linked until now, so thank you. I will definitely read it soon.

The neurologist I saw didn't have any opinion about the narcolepsy, but I did mention to her that I was seeing a pulmonologist for sleep issues/possible narcolepsy with cataplexy. I see a MS specialist in a couple of weeks. Thankfully I was able to find one that would treat me with no insurance/some state aid.

I will definitely be back here to keep updating. I know that I cannot go through another sleep study right now. I know it will be really messed up, plus the insurance issue. Ironically, even though I'm still having a lot of sleep issues, my SP and HH have declined a little bit. I'm not sure if it is because I'm off of third shift right now, but it could be. I don't miss it! I still have HH about twice a week (mostly auditory), but SP only about once a week right now. Weird dreams that wake me up...well...those are always.

Geez, sorry to hear that. But take heart, not all PWMS have a really bad experience. My Grandmother was diagnosed with it for 30 years before she told anyone because it didn't really do much more than give her tingly feelings, fatigue, and occasional wobbly legs. I hope the best for you. *hugz*

"Napping for me has always been weird though because I have the same problem everywhere I nap: I don't realize I'm napping until I wake up and my heart is pounding, I feel like I'm fighting sleep, or I have sleep paralysis. I sometimes can't tell if I'm dreaming or just having weird, random thoughts, but then my heart starts pounding upon "waking." Almost like my body is scared that it has been "sleeping." Does this make sense? When I try to describe it, I feel like it doesn't make sense."

When I read this part of your post it reinforced how helpful this network is. When you deal with something for so long it becomes normal so you stop thinking its important or abnormal. When I had my MSLT, the things you described in the above paragraph, happened 3 out of the 5 naps. They were disruptive enough that the tech came in to make sure I was okay. Luckily I was able to go back to sleep after them (of course I never felt as though I was actually sleeping). I told the tech that "often when I'm falling asleep I will wake up, as soon as I drift off, with a jolt and my heart will be pounding (almost like I'm scared). I had forgotten to mention it to my dr., lets face it, with all the symptoms we try to remember to tell or docs its no wonder we forget a few. When I wake up this way I am usually coming out of a dream as well....not a scary dream just a dream. I don't have scary dreams generally (I'm sorry you do, that totally sucks).
As far as SP goes...my SP is Always worse during naps. When I try and take a nap with the tv on...forget about it!! When I am napping and dreaming but still following along with whatever is on the tv and have SP...it's like being hit with a Mac truck when I finally get myself awake...pretty much whipped out for the rest of the day. I have learned to have the tv Off when I sleep..Always!
When I was finally diagnosed with N I was thrilled to at least have an answer...sadly, I soon found out its a pretty *BEEP*ty answer. Nothing, so far, has really helped me with the symptoms. Nuvigil and Provigil help for a couple of hours but the rebound cataplexy and sleep attacks hardly make it with it.
Thanks for sharing your experience...it's always nice to see when someone reminds you you aren't alone in your symptoms. I hope things get better for you.

I had to start a new account because my old email address had a crazy, fraud thing going on, but I closed that email account before changing it on a few websites so on the advice of an admin here, I have a new account.

I saw my pulmonologist who was in shock about the MS. He kept repeating it during the appointment, "I can't believe it."

He has blamed my sleep problems on the MS, which might be true, but my biggest concern is that most of these symptoms have been going on since I was a young girl and 6 year olds don't normally get MS. He said he doesn't think it is worth repeating a sleep study or MSLT. I would imagine MS causes sleep disturbances, but I think he is also content calling my sleep problems being related to MS. He wants to see me in December to see if the Avonex is helping or hurting the sleep, but I think that might be my last appointment with him.

I talked to my PCP about it and she said she is going to try to investigate other options for another sleep study. She isn't convinced it is all related to MS since my sleep problems began when I was really young. I think I can see why my pulmonologist thinks it could all be blamed on MS: muscle weakness, fatigue, EDS, slurred speech, bad memory, attention deficit, vidid dreaming, even the HH. But if I've been symptomatic with SP, HH, EDS, vivid dreaming my entire life?

In other news, my vision is still pretty bad in the right eye, but it has improved. Nothing is getting worse right now, which is awesome. I'm going into the fourth week of full time classes so I'm keeping busy. I recently switched from regular Ritalin to Ritalin XR which is much better than regular release/immediate release. It doesn't last as long as I would like, but it is much more gentle and I haven't fallen asleep in class yet. That's a big improvement over past semesters.

Back on the MS front, I'm going to pay for a consultation with a nutritionist at the end of the month. I've overhauled my diet, but I know I'm not getting enough good fats even with the hemp oil I take (instead of fish oil) so I'm hoping to get some good advice about diet from her.

DeathRabbit:

I'm sorry that your grandma had MS, but I'm glad it didn't interfere with her functioning at all, or when it did, it was manageable and mild.

jareblake:

I'm glad I'm not the only one with the weird napping issues! I mean, I'm sorry you're having them, but it is reassuring to know that I'm not the only one that feels like this, even if I'm napping in a normal place at a normal time. It's really weird!